APPENDIX 5 CARE 21 RECOMMENDATIONS AND PROGRESS SINCE 2006
We recommend that the Scottish Executive should develop a Carers Rights Charter in Scotland.
1. The Care 21 Report contained a vision statement articulating a rights-based vision for carers. The rights set out included the right to work, the right to rest and leisure, including reasonable limitation of working hours, the right to training and education, the right to access services and the right to a standard of living adequate for health and well-being.
2. The then Scottish Executive stated in its response that a Carers Rights Charter was not one of its immediate priorities.
3. The Work and Families Act 2006 gives carers in employment the right to request flexible working patterns. The Equality Act 2010 (to be commenced) enshrines further rights in law.
We recommend that a national forum representing the views of young carers be established and supported by a separate Young Carers Strategy.
4. See Getting it Right for Young Carers.
We recommend that a range of measures to enable greater control and choice (including shifting the balance of 'purchasing power' to carers and users) be fully explored by the Scottish Executive.
5. The Scottish Government intends to introduce a Self-Directed Support (Scotland) Bill. This would extend direct payments to carers.
We recommend the development of a national 'expert carer' programme. This should include training for people to develop their own caring skills, knowledge and expertise.
6. The Scottish Government made carer training an important part of its guidance on NHS Carer Information Strategies. Many NHS Boards, with partners, are funding carer training, including training related to specific conditions.
7. The Scottish Government funded the online carer training 'Learning for Living,' which provides an introduction to caring and a means of enabling carers to consider their future plans.
8. The Scottish Government funded the national carer organisations to take forward carer training pilots with BME carers and with carers in rural areas. We also funded a Caring with Confidence Lothian Expert Carer Training Pilot.
We recommend that all frontline staff with direct responsibilities for supporting the needs of carers in 'first contact' agencies (local authorities, health and voluntary organisations) are properly equipped to advise unpaid carers about their rights, entitlements and available services.
9. Whilst there is no specific recommendation in Care 21 about the identification of carers, it is implicit in recommendation 5. It is also part of recommendation 6 about the implementation of NHS Carer Information Strategies in all localities.
10. There has been considerable progress over the last few years in carer identification and self-identification. This in turn has resulted in newly identified carers accessing support, including that provided through the network of carers' centres in Scotland.
11. NHS Carer Information Strategies are being implemented in all Health Board areas. Minimum requirements and guidance to Health Boards issued in April 2006 43 made clear that NHS Boards must develop proposals to identify carers and demonstrate that NHS staff are aware of the need to identify carers and to signpost them to sources of support. All NHS Boards submitted progress reports for 2008-09, with further reports for 2009-10 due later in 2010. More carers are being provided with information and advice, or are being signposted or referred to relevant sources of advice.
12. The Carer Information Strategies being taken forward by NHS Boards are helping to train health and social care staff in carer and young carer awareness and carer and young carer support. Many health and social care staff do recognise carers' and young carers' needs and are working with carers as partners in care.
We recommend NHS Carer Information Strategies should be implemented as an early priority in all localities and that the requirements are extended to include local authorities.
13. See recommendation 5.
14. Local authorities are identifying and supporting carers. The Scottish Government has no current plans to formally extend the CIS requirements to local authorities.
We recommend that professional training for all health and social care staff should include a substantial component which relates to unpaid carers as partners in care, carers' needs and the diversity of the unpaid caring experience.
15. The NHS Board Carer Information Strategies, national carer organisations and others have taken forward workforce training.
We recommend a greater role for carer representative organisations in the joint planning and development of care and other services (especially housing, leisure and transport) at a national and local level.
16. National carer organisations and carers are involved in a wide range of strategic developments at national level, including engagement in Changing Lives, Shifting the Balance of Care, Reshaping Care and the development of telecare services.
17. At local level, NCOs and carers are involved in the planning and development of short breaks' services and other forms of support.
We recommend that the Scottish Executive and other policy makers integrate the issues facing unpaid carers into their policy development and planning processes.
18. At Scottish Government level, this has been taken forward through various policy developments, including those in relation to health inequalities, mental health, dementia, learning disabilities, independent living,Reshaping Care and Shifting the Balance of Care.
We recommend that service providers ensure they meet the needs of the whole caring community, taking account of carers with special needs and the specific cultural and language needs of minority ethnic groups.
19. This recommendation is primarily for service providers. However, this strategy encourages service providers to meet the needs of all carers, especially carers in greatest need and those carers who are in the hard-to-reach groups.
We recommend that the Scottish Executive continues to update the Carers Strategy to incorporate the impact of demographic and social change and to plan for resourcing of future need.
20. See recommendation 22. Also, this strategy sets out the full implications of demographic and social change in relation to support for carers.
We recommend that carers' organisations should have a greater role in the inspection of local services that support unpaid carers and users.
21. Carers are represented on the Care Commission Board, and are appointed as lay members to the Scottish Social Services Council Registration and Conduct Committees. All of SWIA's performance inspections of councils involve carers as inspectors. SWIA, in partnership with Carers Scotland, recruited a bank of 18 carers employed as inspectors and run training for carer inspectors with Glasgow College for Nautical Studies.
We recommend that local authorities should work with unpaid carers to develop person-centred life plans alongside the established carers' assessment process.
22. The Government's framework of outcomes for carers and service users, Talking Points, focuses on the outcomes that carers wish to achieve from the assessment process. The National Minimum Information Standards ( NMIS) reiterate this position.
23. Carer's Assessment Guidance for National Standards is available as an Annex to NMIS. The emphasis is on improving outcomes for carers.
24. The guidance is also clear that assessments must be 'culturally competent' in relation to BME carers. The idea of 'cultural competence' has wider applicability to other groups of carers.
25. The Scottish Government is working with partners so that they better understand the importance of the carer's assessment (carer support plan). The aim is to increase uptake and to advance this as a means of ensuring better outcomes for unpaid carers in Scotland.
We recommend that the UK Government complete an early review on carers' benefit entitlements, tax credit and pensions with a particular focus on removing the barriers to work which are inherent in the way current financial arrangements are constructed.
26. The earnings threshold for receipt of the Carer's Allowance increased from £95 a week to £100 a week from April 2010. This is the responsibility of the UK Government.
27. The Pensions Act 2008 introduced a new Carer's Credit (from April 2010) which awards carers with National Insurance contributions in order to protect their state pension even if they are not in paid work.
28. The Scottish Government included families with a child under 16 as a group which qualifies for enhanced measures under the Scottish Energy Assistance Package. This helps parent carers of disabled children.
We recommend that the UK Government should develop a national awareness campaign to ensure that employers of all sizes are made more aware of both their roles and their responsibilities towards carers, and the overall contribution of unpaid carers.
29. The Action for Carers and Employment initiative 44 has raised awareness of the personal and economic implications of carers leaving the paid workforce and is lobbying for change.
30. The Work and Families Act 2006 provides carers with the right to request flexible working patterns if certain conditions are met. Employers are expected to comply and to agree to the requests for flexible working unless there are good reasons for not doing so.
31. JobCentre Plus introduced Work Focused Support for Carers ( WFSC) in December 2009 as part of a carer-specific programme to improve the help and advice available to carers who wish to re-enter the job market. The service is entirely voluntary and carers are free to leave at any time. Care Partnership Managers are in place in all JobCentre districts in Scotland (and the rest of the UK) and advisers are in place in local Jobcentres.
32. Carers UK, supported by partners and Carers Scotland, have promoted good practice on flexible working and have highlighted to employers the skills which carers bring to the workforce.
33. City and Guilds, in partnership with Carers Scotland, has developed a personal development and learning tool for carers, Learning for Living,45 consisting of online learning resources for carers and a qualification. This qualification is designed to help carers to remain in, or return to, paid employment or to progress on to further learning.
We recommend that the Scottish Executive, local authorities and NHS agencies along with partner agencies, focus strongly on the health and wellbeing of unpaid carers.
34. The overarching aim of the Carer Information Strategies is to enable carers to continue in their caring role, whilst protecting their own health and well-being.
35. The Scottish Enhanced Services Scheme for carers is in place in eight Area Health Boards. GP practices in these areas, often with in situ workers from the Third Sector, are supporting carers, and sometimes young carers, in a number of different ways. These include providing information and advice on carers' health and well-being, signposting on carers to sources of support and providing advice on benefits. Some practices have set up carers' registers to ensure they are aware of their carer population and also to identify people as carers.
36. The Scottish Government continues to fund Breathing Space, the free, confidential, out-of-hours telephone advice and signposting service for people experiencing low mood, depression or anxiety. It is available to all, including carers. It is run by NHS24 and the number is 0800 83 85 87.
37. In August 2008 NHS24 launched Living Life, a pilot telephone cognitive behavioural therapy service for people who are feeling low, depressed or anxious. It is available by referral from selected GP surgeries and, by self-referral, in five health board areas. It is part of the Scottish Government's commitment to increase the availability of evidence-based psychological therapies in a range of settings and through a range of providers. In 2009 an additional pilot project was launched to support the commitment to increase availability of evidence-based psychological therapies - the ' WISH' pilot is hosted by NHS Greater Glasgow and Clyde, and involves 3 other Boards.
38. The Scottish Government, working with a range of partners, has developed a national mental health improvement campaign called Steps for Stress. This forms part of the Government's mental health improvement policy and action plan Towards a Mentally Flourishing Scotland. The printed booklet is available in community settings such as GP surgeries, libraries, pharmacies and Citizens Advice Bureaus.
39. The Life Begins at 40 pilot, which started in May 2010, is also relevant. It is now available to all people, including carers approaching the age of 40 in Grampian. It aims to:
- provide access to a set of health related questions for all people reaching the age of 40 in order to assess their current state of health and, on the basis of their answers, to provide them with health information and/or any key areas for action which might help improve their current and future health;
- be available through an interactive online questionnaire or by calling the NHS Helpline number where an NHS 24 Health Information Advisor will take the caller through the questionnaire;
- be available to and for that part of the entire Scottish population who are either approaching or at their 40th birthday.
40. In response to the Children's Commissioner's report ' Handle with Care,' Ministers approved in 2009 a number of proposed actions addressing issues surrounding the manual moving and handling of children and young people with disabilities.
We recommend that issues facing unpaid carers are given proper consideration when new technology is applied to caring situations.
41. Over 25,000 people in Scotland have received a telecare service as a result of the National Telecare Development Programme. The Scottish Government launched this programme in 2006 with substantial investment of over £20 million to help local authorities accelerate the adoption of supportive technologies within mainstream care provision.
42. New guidance on the provision of equipment and adaptations was issued by the Scottish Government in December 2009 46. The guidance aims to assist local authorities and their NHS partners to modernise and integrate their equipment and adaptations services within the wider community care context.
We recommend that Scotland's existing network of local carer support organisations is strengthened (carer training and peer support; emotional support and counselling; breaks from caring; advocacy).
43. The Scottish Government provides core and project funding to the national carer organisations. Some local authorities and Health Boards fund local carer centres. The Lottery programmes have also funded centres.
44. See responses under recommendations on carer training, health and well-being and breaks from caring.
45. Since 2000, the Scottish Government and Scottish Independent Advocacy Alliance ( SIAA) have led the development of independent advocacy in Scotland.
46. The Scottish Government is committed to ensuring that there is appropriate provision across Scotland of advocacy for people who need it. One of the achievements has been the inclusion of a right of access to independent advocacy in the Mental Health (Care and Treatment) (Scotland) Act 2003. The Independent Living Shared Vision looks towards disabled people having access to a range of structured, valued and accessible advocacy services to support their access to independent living in all aspects of day to day life.
47. Earlier this year, SIAA produced A Guide to Commissioners and Principles and Standards 47 and an Evaluation Framework Toolkit 48 Some additional work is planned around the development of guidance on advocacy for children and young people. In 2008 the SIAA published updated Principles and Standards for Independent Advocacy 49 and an associated Code of Practice for Independent Advocacy. 50 The SIAA has also developed a leaflet which gives advice on Advocacy for Families and Carers. 51
48. The SIAA is currently reviewing and updating the Map of Advocacy provision across Scotland. When completed this should help identify gaps in provision of advocacy services.
49. The Patient Rights (Scotland) Bill aims to place patients at the centre of the NHS in Scotland. This healthcare legislation, if approved by the Scottish Parliament, will help ensure that patients' rights and entitlements are more widely understood and used.
50. One of the key aspects of the Bill is the creation of a new Patient Advice and Support Service ( PASS) within Health Board areas. This will be staffed by Patient Rights Officers who will help and support patients and members of the public to make complaints, will provide information about health services, and will direct them to other useful types of support, including advocacy.
51. The Scottish Government is providing funding of £1.5 million to assess need and provide additional advocacy services over three years in order to improve access.
52. The Independent Advice and Support Service ( IASS) funded by NHS Boards is available in all NHS Board areas to provide support for people who have concerns or wish to make a complaint about NHS services. It is proposed under the Patient Rights (Scotland) Bill to enhance and replace IASS with a new Patient Advice and Support Service.
We recommend that national carer organisations focus on their collective role as the 'voice of carers' and coordinate effectively their capacity in the planning, development and monitoring of carer policy and support services.
53. This is a matter primarily for the national carer organisations, who work together on various initiatives. The Scottish Government encourages such joint working and will be encouraging this further in the years ahead.
We recommend that as an urgent priority the Scottish Executive develops a national strategic framework with service providers to ensure unpaid carers are given a statutory entitlement to appropriate short breaks and breaks from caring.
54. There is no statutory entitlement to short breaks.
55. The Scottish Government, with COSLA and partners, issued guidance in December 2008 on short breaks (respite). http://www.scotland.gov.uk/Publications/2008/11/20094716/0. Scottish Government Ministers have publicised this guidance, which sets out key issues about short breaks including the purpose of short breaks, choice and personalisation and strategic planning. It contains good practice examples.
56. Under its Concordat agreement with local government, the Scottish Government has committed funding of £4.19 million in 2009-10 and 2010-11 so that local authorities can deliver an additional 10,000 respite weeks by 2011 in comparison with 2007-08.
57. In 2008-09, local authorities increased respite weeks across Scotland by 1,150 weeks. The 2009-10 figures are due in the Autumn.
58. The Scottish Government is proactively working with Shared Care Scotland and other organisations to consider and take forward innovative solutions around short breaks provision.
59. The findings of the research, funded by the Scottish Government and commissioned by Shared Care Scotland, which will be available later in the summer, will be widely disseminated. The Scottish Government and Shared Care Scotland expects this research to help inform decisions at national and local level about short breaks' provision.
We recommend that the report's recommendations are incorporated into providers' performance management systems and progress monitored by the Scottish Executive and, where appropriate, relevant regulatory and inspection bodies.
60. Many statutory and voluntary sector providers will be aware of Care 21's recommendations. SWIA takes account of the recommendations in its inspection of services for service users and takes carers' views into account. The provision of respite weeks (10,000 weeks by 2011) is monitored under the Concordat agreement. The Scottish Government's response to this recommendation will be further developed through this strategy. Local authorities, do, however, have responsibility for determining priorities at local level.
We recommend that good policy must continue to be based on good research including reliable statistical evidence with attention to the diverse experiences of unpaid carers.
61. The Scottish Government is publishing at the same time as this strategy a research publication, 'Caring in Scotland: Analysis of Existing Data Sources on Unpaid Carers in Scotland.' For the first time this brings together in one place all the statistical data on carers.
62. The main sources of information on the prevalence, intensity and trends in caring up until now have been the 2001 Census and the Scottish Household Survey. The Scottish Household Survey questions have been refined over the years to get better information on carers.
63. The 2011 Census will contain a question on caring similar to that in the 2001 Census. There will be a further breakdown on hours of caring: the 20-49 hours per week category will be split 20-34 hours and 35-49 hours per week, to bring the Census in line with the Scottish Household Survey and also to determine the number of carers providing 35 or more hours per week, the current threshold for Carer's Allowance.
64. The Scottish Health Survey provides a detailed picture of the health of the Scottish population. In 2008, the Scottish Health Survey began to collect information on carers for the first time and some results are published in the research publication noted above.
65. The Scottish Government is now publishing, as Official Statistics, information on respite services provided by each council in Scotland. This data will be used to monitor the Concordat Commitment to increase respite services by 10,000 weeks by 2011. The latest publication is available at: http://www.scotland.gov.uk/Publications/2010/02/22113516/0 The Scottish Government is working with local authorities to improve the quality and consistency of this information.
66. As part of its performance inspection of social work services between 2005 and 2009 the Social Work Inspection Agency ( SWIA) carried out a survey of carers who are in contact with social work services. There were 3,599 questionnaires returned across Scotland. The results of the survey can be found on the SWIA website at: http://www.swia.gov.uk/swia/findstatsdocument.htm?message=blank